Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

One of my greatest pleasures of being a new parent, aside from the love I get and give, is reconnecting with child like communication and games. I love going with Mia to her music group for several Wednesday morning sessions. It was me and the kids and the moms and a skilled kids musician with a sweet voice and smile who sprinkles kids rhythms with folk tunes.

Debra uses lots of aids, a felt painting, large puppets, bags of plush toys, choo choo trains and musical instruments. Of course she has 'super' bubbles. So a medley of train folk songs would be started by her energetically spilling 20 little toy trains and then asking the kids, Who has the yellow train, Who has the red train? The bag of veils are for the kids and parents to pull over their heads during the Sleeping Bunnies song. Just as energetically she encourages everyone to clean up the items in seconds.

At SickKids there is the Bear Theatre with regular performances for kids and occasional concerts and one on one music through Child Life in the private rooms however there appears to be no small music groups. So I asked the only two professional musicians I know, hey, would you be interested in a committed kids group at SickKids and both were completely enthusiastic. I first asked Treasa Levasseur as I had listened to her bands during our time at SickKids, I knew she ran children's groups and she had played at Sasha's unveiling. A Time Magazine Canada review of her latest album puts her energy into perspective: "The CD [Not a Straight Line] is an impressive achievement for the 32-year-old Torontonian, who spends her days traveling in a van full of instruments making house calls to teach music to children."

Caron Mills of Child Life at SickKids was also enthusiastic when we connected by phone this week. She will pull together input from her team so we can look at venues. With the support of Child Life the kids can come from all around the hospital for a weekly session in a playroom. With maybe an emphasis on getting the dads out to have fun and bond with their kids which naturally gives the moms a little break.

We have been invited to participate in an advanced practitioner's workshop March 3 at the Max and Beatrice Wolfe Centre on a parent panel and we met with Stephen Jenkinson to discuss. We sat in the very same small office on the very same seats as when we first met to talk about Sasha in May 2006. Stephen holding Sasha's sister Eve while we talked about tricky communication with parents about palliative care embodied the coexistance of life and death that is the essence of the work at Max and Beatrice Wolfe Centre.

We all defer to a parent's presumed competence and experience. You know I ask audiences what business are you in? Well, I am in the business of democratizing your and your children's right to a good death. And there is a right and with that right there is a responsibility. With knowledge there are consequences. If dying is a realistic possibility, parents should know that and act accordingly; there is no opt out clause once you let that knowledge in. There are times when more life equals more death. You need someone who is an expert in dying and not just social workers or psychologists. I asked doctors in the CCCU, how many of you came into medicine to help dying children? Noone put up their hand. How many of you are trained to help dying children? There were some hands. Then I ask how many of you cared for a dying child this week. Everyone looks around and puts up their hand. Someone has to speak to parents and share disagreement over continuing. You know, when a number of people on the team feel "This cannot go on". We go by the "do no harm" principle with those in care, part of the harm is a lifelong effect on the family. And how do you deal with parents who have different perspectives, like yourselves. Staff have to learn how. And we know if parents try opt out, there can be efforts to gather them back in. We have this wrong assumption: working with dying is just a subset of our experience and what we do. I was just at a big palliative association where the presenter referred to a 'four year old who would not have a normal life'. I said 'Wait, he will have a normal 4 year old life. Plus an extended stay at hospital.' What do you need to do during a palliative care discussion? Well first off, not in the hallway! And this is not about brute speculation. You need to quiet things down and then really engage the parents. And this is not a question of knowing, you knowing or us telling you. There has to be room for some mystery. You know that statistics is just a puny lunge: if we offer several statistical scenarios, what are parents going to choose? Parents will choose to hear the best outcomes. And then we also have to agree that there are certain 'whys' I cannot and am not going to answer. The fact of dying should change everything but sometimes it doesn't.

These notes record fragments of the conversation. I tried to be accurate and faithful to Stephen's spoken style however any errors are mine alone. He is best heard in person.

The Max and Beatrice Wolfe Centre is entirely funded through the support of their donors and the 2007 Unicorn Dream Dinner raised $167,000 to help Max and Bea expand programs and add key staff. Last year the staff held a camp at Riverdale Farm and also a very special one day camp in the Unicorn Room for a family of 5 children (aged 6-13) whose mother died last January. In June there was a Father's Day Ceremony for families who had lost a father, in preparation for father's day. And the Max and Bea is now providing death and grief education to Toronto schools. The Centre will also be involved throughout the year in developing specialized training modules adapting the EPEC Project for children. And two new books have been published, an illustrated novel of six children living with the dying and death of a loved one and a practical handbook of questions and answers by kids, for kids.

Thanks to an NICU family request, the Fund has reconnected with SickKids NICU. Sasha went to NICU from Mount Sinai Hospital on the night she was born however we only spent a few days there as her cardiologist quickly established her issue and allowed us home (as we wanted) with a very blue baby saturating in the low and mid 60s.

After bumping into and meeting the family for the first time (Jonathan, Janis and Diane) in the hallways of SickKids after a CCCU education session on Monday, I called up Dr Jonathan Hellman, Clinical Director of SickKids NICU. The following afternoon he called me back and we had a much appreciated discussion about NICU plans. We ended with Dr Hellman sounding excited to engage us in a family-centred brainstorming session with his team and the fund and parents. NICU will get back to us on a time.

I had read the ambitious 2005 strategic directions sketching out a triple play evolution in NICU: a new individualized developmental program, equipment that would allow continuous monitoring over 24-48 hours rather than depending on snapshots and a rearchitecting of the NICU to allow night and day, private individual rooms for baby and mom, stimulation in the form of sound and color. They wish to bring on two new staff fulltime, to merge social science and neuro science.

This program of advanced individual development has not been fully embraced, he admits, and is partly based on work by maverick Heidi Als on infant brain development. It is hard to scan if development programs make a structural difference. So they are looking to confirm that such a program can produce the traditional measures of expanded neural cortex, parent satisfaction and involvement, breastfeeding and bonding.

Dr Hellman is an advocate for the nurture side of the nature-nurture equation. As he sees it, intuitively there is no question that a mother who spends more time with the baby and gets more info will be a fantastic mother. "Intuitively we know its better that the mom is with her child, feeding, rather than when we call the mother in three times a week with no breast milk."

"I am not a complete contrarian but I dont buy that genetics loads the gun and that is the end of the story. Genetics doesnt do the rest. You know what, we have learned, after much study, ok, so breast feeding is good!"

He noted 'Implementation Science' requires us to look carefully as to how data is constructed from what is implimented at bedside. One size doesnt fit all and we have to look closely at physical and cultural and financial contexts. He referred to something so easy to know it would be like his Bobba telling him: you know if people dislike something they will try and stop it. So its not just about science and new genetic breakthroughs but how changing practise makes its way to the bedside and is then measured.

He shared a wonderful program setup by Linda Lo Re called PJs for Preemies, small sets of fleecy pajamas for tiny preemie babies.

In preparing for our CCCU presentations I was talking to CCCU nurse educator Karen Dryden-Palmer and she made it all fit into place when she described NICU as "the birthplace of family-centred care".

Ryan remembered the call from his wife telling him that his daughter at age two had been diagnosed with cancer. Worse, and what started a new life for Ryan, was that the wrong diagnosis for cancer subjected her little body to poisonous doses of chemotherapy. As he puts it bluntly: "She spent the last month of her life in ICU with her belly open."

In addition to the mis-diagnosis, Ryan's careful research and presentation of several treatment options were ignored by hospital staff. More than one of these experimental treatments are now routine. Ryan and his wife divorced, each reminding the other of their child's horrible death. After experiencing first hand a wrong diagnosis leading to unnecessary pain, suffering and death, Ryan accepted a position as a patient safety representative in Manitoba.

On a positive note, "Ontario is leading the way with Interprofessional Practise." Much of the talk focused on elements that constitute trust in a care-family partnership. Respect, sharing uncertainty, truth telling, plain speaking, forging partnerships. There is a power dynamic seen in a very simple observation: how often do you see patients asking doctors to wash their hands on entry to their room? "Health care is only slightly harder to change than the Vatican."

I loved his reference to my childhood hero Saul Alinsky who went out into communities to help grassroots organizing. With their first parent safety committee Ryan admits that, with their mandate, "we left it open-ended and that was a mistake". Despite work, "The process to lodge complaint against a physician is a very disjointed process". Taking up matters with the Patient Rep is retroactive, the damage has already been done.

It was good to hear that Canada is a world leader on Patient Safety. [That also means we take seriously perceived gaps between rhetoric and practice.] At a conference in San Francisco in 2005 he recalled how the North Americans focused on technical and organization solutions while he was struck by the South American focus on the care process itself and how it could be humanised.

He delved into how measurement can be sufficient to promote quality. There is an old saying (Dennings?) that you can only measure 3% of what matters. Important is not to focus only on the numbers as much as the process and the dynamic. Capra, Bohm, Plsek suggest to look at patterns and not outcomes to effect change. Relationships, decisionmaking, power (who has, who has less), how manage conflict. How learn. He also differentiated simple, complicated and complex tasks and notes, from Plsek: "Healthcare is a complex adaptive system."

He differentiated Quality (the degree of excellence) from Safety (freedom from danger or risks and reduction of preventable harm) and pointed out that attempts to improve quality of life can inherently put the patient at risk. Safety is a core value, not a commodity and safety shows itself by events that do not happen.

"Those that will get along will usually get out alive" and, later: "We all know the patient better than the care-givers." An issue grappled with by safety advocates is when does safety trump privacy?

Ryan then showed a film with several parents speaking about tragic deaths due to medical error. Each of them described what their kids went through. "As parents, we see medical error from start to finish. Few others will." These voices he reminded us are not only sad stories but powerful reminders and powerful learning opportunities. For Ryan it was as simple as: "Noone told me jaundice can cause brain damage with cerebral palsy". For an Irish mom it was that "Doctors dont realize that whey they treat us poorly, they create another patient. We go away sick." Another talked of being blacklisted by the top pediatrician in her state from getting medical coverage.

Others touched on a very interesting reality. When a child dies in ambiguous circumstances, there is a tension between hospital staff being transparent and empathetic and growing concern about liability. Most parents natural inclination is to be satisfied with genuine efforts at remedy that protect other patients. Parents described staff responses in the immediate aftermath as heartfelt, with apologies and offers to remedy. Where the discussion about specific remedies break down and parent's still persist, hospitals can draw up the wagons and the initial empathetic nurse or administrator is replaced by hospital lawyers facing off against parent's lawyer in a no holds barred legal struggle.

I have come to realize that patient safety work is a key hubs of family centred participation. Working within their own organization, associated with the World Health Organization, patient safety committees are impacting hospitals, providing commitment, protocals and pressure from outside the hospital. They meet with ethicists, geneticists and themselves become expert on patient processes. Often they develop this expertise because they are shut out from any remedy at the hospital where the tragedy happened.

Lesson #1: Know thyself. Many realities exist simultaneously. Each person's reality is based on self-developed perceptions. Requisite to trusting self and others is in knowing your own mental model (biases, values, and goals).

Lesson #3: Develop constructive conflict resolution skills. In the collaborative paradigm, conflict is viewed as natural and as an opportunity to deepen understanding and agreement.

Lesson # 4: Use your power to create win-win situations The sharing of power and the recognition of one's own power base is part of effective collaboration.

Lesson #5: Master interpersonal and process skills. Clinical competence, cooperation, and flexibility are the most frequently identified attributes important to effective collaborative practice.

Lesson #6: Recognize that collaboration is a journey. The skill and knowledge needed for effective collaboration take time and practice. Conflict resolution, clinical excellence, appreciative inquiry, and knowledge of group process are all life-long learning skills.

Lesson #7: Leverage all multidisciplinary forums. Being present both physically and mentally in team forums can provide an opportunity to assess how and when to offer collaborative communications for partnership building.

Lesson #8: Appreciate that collaboration can occur spontaneously. Collaboration is a mutually established condition that can happen spontaneously if the right factors are in place.

Lesson #9: Balance autonomy and unity in collaborative relationships. Learn from your collaborative successes and failures. Becoming part of an exclusive team can be as bad as working in isolation. Be willing to seek feedback and admit mistakes. Be reflective, willing to seek feedback, and admit mistakes for dynamic balance.

Lesson #10: Remember that collaboration is not required for all decisions. Collaboration is not a panacea, nor is it needed in all situations

Today we received a new issue of Links For Life, The Newsletter of the Alagille Syndrome Alliance, and as always it was read from cover to cover. The newsletter has grown from its start 4 issues ago and was the fullest ever: more children and parent stories, exciting medical updates, itchy tips, a preview of the 4th annual Alagille Convention, birthdays and memorials, editorial comment, web fund-raising initiatives and new donation products to purchase. We love the fact that Sasha's birthday is recorded every year.

And there is big news in the world of Alagille. Finally, CLiC Centres are open for Study Enrollment of cholestatic liver disorders. Cholestasis is a condition where a paucity of bile ducts causes a decrease in bile flow from the liver to the intestine causing yellow eyes and skin (cholestatic jaundice), reduced birth weight, problems gaining weight and growing. Substances like bilirubin, bile salts, cholesterol and toxins that are normally eliminated in bile build up in the liver. The increased bilirubin causes jaundice, the build-up of bile salts in the skin often cause very annoying, sometimes severe itching that interferes with the child (and all the family's) sleep and scratching that can damage the skin. Too much cholesterol causes fatty deposits in the skin (xanthomas). Buildup of toxins and metals such as copper can cause liver damage. "In many patients, the symptoms of liver disease in AGS (jaundice and itching) actually stop getting worse and even improve after a few years of age. In others, the liver disease continues to get worse and may end up causing scarring of the liver (cirrhosis) or increased blood pressure in blood vessels going from the intestines to the liver (portal hypertension). If the liver disease is severe (as it is in 20-30% of patients), liver transplantation may be needed." (CLiC) Sasha was ineligible for liver transplant (due to her pulmonary atresia) so we observed her liver for improvement, maintenance or signs of severity. We had clues that she was fragile (bleeding episodes during caths, at home and after the first surgery; blood saturation drop during exturbation). Sasha's liver disease was either severe or was the second cardiac surgery put unsustainable pressure on the organ.

Peter Hammond, a computer scientist at the UCL Institute for Child Health in London England, has developed computer software to speed up diagnosis of genetic conditions with up to 90% accuracy. 3D images of children with different conditions were scanned to create composite "average" faces of children with more than 30 different conditions. You can get more information about this exciting project on the BBC website and Research and Development News. 40-60 scans are needed and in some cases of very rare deceases that is more than there are children in the world with the condition.

And here is an inspiring Alagille story - Hunter Messer overcame many odds including getting cancer after his liver transplant to achieve success in life and sports (4 gold medals at the 2007 transplant games). What an inspiring young man! You can view his site here or watch a video at the local San Antonio Fox news (click on Sports then scroll to 11-04-07 to watch "Swimmer Overcomes Odds").

The Alagille Alliance is now registered with GoodSearch.com, the search engine with a social mission, and GoodShop.com, an associated online marketplace - both donate a portion of their revenue to non-profits. If you shop on eBay you can also donate to the Alagille Alliance via MissionFish.org.

The Sasha Bella Fund has a half hour early morning slot at mandatory Interprofessional Practise education days in the Cardiac Critical Care Unit. There are seven days in January, February and March and we are very much looking forward to the opportunity to ask questions together that continue to improve communication between families and staff. Thanks again to nurse educator Cecilia Hyslop for the invitation.

An article by Diane Flacks in today's Toronto Star, Giving up not an option, so laugh, sharing her and Janis's journey with Jonathan at SickKids, reminds us that coping with children's extreme medical challenges requires not only back bone but a well developed funny bone.

"To keep going, I was held aloft by three pillars: the love and support of family and community, an inappropriate sense of humour, and those fabulous bitter blue sleeping pills. Sure, there were times when I was filled with the raging desire to throw Jonathan's IV pole through his window...The roller coaster of euphoria and despair at Sick Kids, the fragility of the art of medicine and the absolutely random suffering of children can make you lose your noodle. The thing that often saved me was laughter. Not "polly-polly bright side" – that annoying state of optimistic denial, ignoring that our child was in pain and in critical condition – but discovering the absurd in the midst of the crisis."

Laughter as tonic for fear. Laughter as love. Laughter as a cry for help. Laughter as professional respect and inclusion. Laughter as necessary distraction. Laughter as a beautifully human way to keep death at bay. The corridors, private rooms, washrooms, meeting rooms, education rooms are filled with laughter of all kinds. Diane's piece reconnected me to those extreme emotions we felt while in care: utter disbelief, gnawing fear, blooming hope, raging anger, deep grief, transcendant appreciation. That awful anxiety of having a sick kid comes with potential for a deep reconnection to life and death and the ability to laugh and cry within moments moves even jaded, bunkered, blackberried out male souls into the warmth of that absurd realm Diane transports us to.

Jokes that later made me cringe helped lift a heavy weight. We bonded with Sasha's cardiologist because we respected her knowledge and effort and communication style (focused listening, priority summarising - great for brains in info overload). She also smiled when we made inane comments that could seem certifiable to some, certainly a sign of complete lack of fitness to parent, let alone parent a sick kid. Awkward, irritated, truthful, suggestive jokes were just part of the banter.

No surprise they are mostly stricken from memory, just leaving damp warm imprints. The safe jokes about the environment, leading jokes about when something or someone would appear, revealing jokes about matters we have mutually agreed to leave unsaid, for now. Humour was coping and strategy and a common form of subtle or not so subtle communication with core teams. Humour was the last refuge for a gripe when we had differences of opinion. TPA man. Between a rock and a hard place. I am going to lose my mind. You can do that but I might have to jump over this bed and throttle you.

When Sasha was doing well, at clinic discussions, we often explored what Sasha could do. What are the limits to experience when you have a cardiac shunt? We often dreamed of taking her to a gorgeous beach. Our cardiologist was expansive in supporting Sasha's home life however she pointed out there was a lot of risk to air travel. As we saw it, "So we can take her on an aeroplane to a beautiful beach but that might kill her." Smile. Ok, no flight this year. Sasha never flew on an aeroplane, that we know of.

Parents joke about everything however jokes by doctors and nurses are a different matter. Often treasured. Sometimes disliked intensely. Humour is endemic at the hospital and I imagine in most functional hospitals as the presence of death can create a different oxygen. Humour reveals deep understandings between families and care givers, it grows over time, or in rare cases you click and it happens faster, as care giver and family learn each other's styles.

Yet there is always a danger of inappropriate frivolity and the cage closes: you need to know us and we need to like you. We had one doctor joke with us about risks Sasha faced during a proceedure - it wasnt the first wierd incident, nor were we the only one's ticked off, so it was the final delivery and we requested him off our care team. Goodbye, funny guy. That kind of humor made us inhumanly serious.

Here are several broad initiatives to deliver family centred care in a large complex medical institution like SickKids Hospital.

1. Expand parent participation to every service and most teams in the hospital aiming to reflect the race, gender and background of the parent population as a whole. The hundreds of volunteer hours per month are provided by parents whose children are no longer in care, are experiencing a positive care path or volunteers interested in contributing their experience. The 2005-2006 Family Advisory Committee report notes it was "initiating a transition that will soon see the Hospital assume full administrative responsibility for the program. This should enable many more staff and students, often in interdisciplinary groups, to participate in the sessions and to take away with them ideas to draw upon and strategies to apply in their practice." The hospital could then go further, introducing parent advisory involvement at all levels.

2. Expand patient and family participation in SickKids data flow to open electronic access to the key data (contact info, diagnosistic history, care maps, schedules, actionable items, parental presence and resusitation wishes) and provide an entry point for notes on meds, symptoms and daily events. The parent login facilitates family-centred interprofessional practise and makes transparent all possible junctures along the care path including DNR orders. No such parent editable access exists however computer databases are being devised and funded continually and SikKids website is to be completely revamped.

3. Thanks to a blog comment on this entry, demonstrating the power and speed of collaborative data, we can naturally add a third facilitator of family-centred care: helping families to connect at parent meetings with a SickKids facilitator (as on floors 5 and now 4) or as Lisa suggests via a buddy system. So simple you can see the signs: Get a Buddy; Become a Buddy.

We would love to hear of any successful initiatives relating to family advisory committees, collaborative computing or parents helping parents that you might have seen, heard or read about at SickKids or elsewhere.

The Sasha Bella Forever blog began in 2006 as a tribute to our first daughter and her caregivers as we brought her home from the hospital to die. Expecting just a few days together, we had five incredible weeks. These posts celebrate the life of children with complex care needs and their families and staff partners in care. The posts also share the work of The Sasha Bella Fund For Family Centered Care at SickKids Foundation across the spectrum of care, education and research. From Sasha's experience, the fund and blog focuses on partnership, inter-professional and inter-disciplinary teamwork, palliative and end of life care, patient safety, care for the care-givers, patient and family advisory, peer support and the special challenge of the ICU. Please share, or Like or comment if you are moved by a particular post or think of The Sasha Bella Fund during your charitable giving.Regards,Jonathan Blumberg (Sasha's dad)

The Fund supports family-centered interprofessional care, family advisory, patient safety and palliative care with low cost initiatives like awards, small grants to programs and research, website initiatives, murals, sharing our story and volunteering at the hospital. See a list of fund projects and please consider donating securely online at Sasha's SickKids Foundation page (a tax receipt is emailed immediately) or by calling Laurel at SickKids Foundation.

All donations to a directed family fund like the Sasha Bella Fund For Family-Centred Caregoes to projects at SickKids Hospital with no Foundation overhead.

What is family-centered care? Frank Gavin offered a great definition in the 2005 Family Advisory Council report:

"Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Thanks to all the almost 1000 families who have helped SickKids through The Sasha Bella Fund since 2006 and who in October 2009 helped raise $20,000 for Sickkids Hospital and Bloorview Kids Rehab. Special thanks to the performers who donated their special skills, Sho Mo + The Monkey Bunch, Charlie and Little Fingers, Deb Maes, Bloorview therapeutic clowns and Master Choung Taekwondo club, and The Stockyards, Ravisoups and Mildred Pierce for an incredible lunch. Checkout pictures of the 2009 Fun Day by Peter Fenyevesi and Bryan McBurney.

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids ... encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look." Janis Purdy and Diane Flacks

Sasha was born with Alagille Syndrome and pulmonary atresia, serious liver and cardiac defects leaving her ineligible for transplants. Cardiac surgery was risky but without more oxygen to her lungs Sasha would die. Our core SickKids team was the 4D nurses, cardiologist Dr Jennifer Russell, surgeon Dr Glen Van Arsdell, catheterization specialists Dr Lee Benson and Dr Jin-Lee and gastrointerologist Dr Simon Ling. The plan included catheterizations to widen tiny arteries, surgery to install a central shunt at 3 months, more caths and more surgery to partly rebuild her collateral arteries into a pulmonary artery. A blue baby came home after birth and grew into a golden haired 18 month cherub with only short hospital stays. She appeared to thrive; yet as we rebuilt Sasha's heart, her liver weakened. A second surgery resulted in hemorrhage, fever, liver failure, portal hypertension, GI bleeds, and a jejunal fistula to her belly. We accepted Sasha was dying when she required daily blood transfusions. She came home supported by the Temmy Latner Centre, TCCAC nurses and SickKids - we expected 3 days with our peach but she stopped bleeding and lived five precious weeks.